It’s often called the invisible disability, but according to Health Canada, an estimated one in 100 babies are born with fetal alcohol spectrum disorder (FASD).

Many of those who live with FASD suffer from, among other things, depression, have learning disabilities and sometimes have difficulty understanding the consequences of their actions.

The birth defects and developmental disabilities that result from FASD are caused by drinking alcohol during pregnancy.

While Health Canada states there are more than 300,000 people currently living with FASD in the country, some advocates say the actual amount is substantially higher due to widespread ignorance about the condition among physicians who misdiagnose the disorder, as well as biological mothers who fear the stigma that might result from admitting they drank alcohol during their pregnancies.

A scarcity of clinics where children suspected of having FASD can be officially diagnosed compounds the problem. The Hospital for Sick Children in Toronto closed the doors of its FASD clinic last March, citing a lack of resources needed to run the specialized neurodevelopmental assessment clinic.

When it comes to the school system, FASD, at least until recently, has been flying well under the radar.

A search on the Hastings and Prince Edward District School Board website returns more than a dozen hits when the search term autism is used. Searches for Down syndrome and attention deficit hyperactivity disorder (ADHD) also return some results, but type either fetal alcohol syndrome disorder or FASD into that same search box and the response is “no results found.”

Last year, the provincial government announced it would be investing $26 million over four years to expand support for children, youth and their families and caregivers affected by FASD.

The provincial FASD strategy will include creating an online hub for teachers and parents, hiring more than 50 FASD workers across the province, fund research as well as containing an FASD prevention component.

Maryann Post, a member of a local FASD advocacy group, said she’s concerned the money being spent may not only be not enough to properly address the problem, but the funds that are being spent could be put to better use.

Post is all too familiar with having to advocate for someone suffering from FASD.

Post and her partner adopted two children from the Children’s Aid Society in 2008, one of which they later found suffered from FASD.

At only four years of age, her newly adopted daughter was also already showing signs of combative behaviour.

“Our daughter was an aggressive and violent person,” Post said. “She would hit her teachers and she would hit her peers.”

By the time she was eight, her behaviour had increased along with her educational demands. She began to self-harm as well as threaten the lives of others.

“Despite her throwing crayons at teachers and telling them where to go and biting and kicking and carrying on, they just looked at her as being a defiant child.”

Post said it’s important to understand FASD is not a behavioural disability, but a physical disability much like a person affected by an acquired brain injury.

Five years later, in 2013, Post was finally able to get the needed supports for her child in place. Now in Grade 8, she is doing well and set for her first year in high school next year.

“If it wasn’t for Children’s Mental Health, I could still be running around in circles,” Post said. “They knew what they were doing, they knew the red flags.”

Post said what she’d like to see in schools is giving teachers the tools to recognize the triggers of someone affected by FASD as well as having early intervention strategies available once those triggers are recognized.

A rethink of the province policy for all children to be integrated into regular classrooms might be in order, she said.

“Some children don’t do well integrated.”

As for the province’s current efforts, Post said she feels they could do much better than $6.5 million per year.

“It’s important for people to know that $1.9 billion was received in tax revenue from the sale of alcoholic beverages in 2016,” she said, adding that even a small percentage of that revenue applied to FASD supports would provide a much larger funding pool.

It’s not just the amount Post has concerns over. With an existing system for children’s mental health and counselling services, she said she’s not sure why the province didn’t invest into that.

With thousands of children already on waiting lists for a year or more for children’s mental health services, Post said the $26 million could go to good use.

“It just feels like we’re duplicating something already in place.”

This past December, Kingston and the Islands MPP Sophie Kiwala raised a private member’s bill that called for an amendment to the Education Act to promote awareness and understanding of FASD, as well as best practices to support students with the disorder, and to collaborate with parents and caregivers to do so. It was unanimously supported at Queen’s Park.

Kiwala said she was inspired to author Bill 191 after speaking with an FASD parent and caregiver during a meeting in her riding.

“[What] became clear to me ... was that all children who are affected by fetal alcohol syndrome disorder end up going through the school system,” said Kiwala, adding the number of stories she was hearing from parent groups across the province on some of the challenges they were experiencing in the school system had a common theme — a lack of resources at teachers’ disposal to help work with students who are affected by FASD.

“Often children who have FASD will present similarly to children who have opposition defiance disorder, or other behavioural issues when it’s not actually the case,” Kiwala said.

Kiwala said that since all children go through the school system, it made sense to create a system where educators have access to enough resources for a teacher to recognize FASD and respond with a proper strategy “and create the best possible educational outcome for each and every student.”

Kiwala will be hosting an FASD advocacy day at Queen’s Park on April 11.

Post has created an online petition in support of Bill 191. It can be found online at www.thepetitionsite.com/en-ca/287/637/880/support-bill-191-am-end-the-education-act-to-include-fetal-alchol-spectrum-disorder/.